Living with Sclerocornea
A rare inherited eye condition in which opaque tissue from the white of the eye grows into the edge of the cornea.
Understanding Sclerocornea
It affects both eyes. It does not cause inflammation, does not get worse over time, and is not linked to other eye differences.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes these:
- Opaque tissue at the edge of the cornea
- Blood vessels growing into that tissue
- Involves both eyes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in GJA8 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by changes in the GJA8 gene. It is autosomal dominant, so one changed copy of the gene can be enough.
Also known as: hardening of skin and connective tissue; isolated congenital sclerocornea; sclerocornea (disease)
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Sclerocornea.
Explore research for Sclerocornea
Explore actively recruiting Sclerocornea studies with HealthSpark.
Find actively recruiting studies for Sclerocornea with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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